An update from the homefront

We're home! We got discharged from the hospital Wednesday evening and made in home in time for evening breathing treatments and the chaos that typically ensues with bedtime. Everyone has been out of sorts for the past few days - not feeling well, not sleeping well, not knowing what's next - so it will be nice to rediscover our groove. All of the tests that they ran on Drew came back negative. Their first suspicion was that he had a bloodstream infection from his PICC. When he wasn't showing signs of sepsis, they started to test for the flu. When we went into the ER he only had a fever and had turned a pale-ish blue color, despite his oxygen saturation being at a totally reasonable level. He had no signs or symptoms of the flu, though I learned that sometimes symptoms follow. Regardless, the flu test came back negative as well. We spent most of our time in the hospital just waiting for results while hooked up to meds. Everyone suspected that he had some sort of viral infection, but when the viral panel that they ran came back negative and he got better, they decided that it would be okay to send him home. It probably was a virus that caused the fever, but not a typical one that shows up on the standard viral panel. Having a virus can cause the body to produce more mucus and inflammation, and in CF that can stir up bacteria and cause trouble. That is the best guess of what happened.

We are home now on two more weeks of IV med. Prior to this admission, we had spent the past two weeks on one IV antibiotic + an oral antibiotic + an inhaled antibiotic. That combo didn't seem to have any impact on his health, leaving him with the same lingering cough that we had been working so hard to suppress. This time we are trying two - IV ceftazadime and IV cipro. We were so ready to be done with IVs because they must be run every 8 hours around the clock for 2 weeks, but it's what he needs so we will do it.

A big thank you to everyone who brought us coffee, sent us dinner, drove our kids to or from school. We don't always know how to ask for help, but every kind gesture is greatly appreciated!